Frank’s Story

Looking back, even only 6 weeks later, I have really fond memories of labour (weird, right?!). Mine was pretty straight forward (at least I thought it was at the time). I managed to spend a whole day at home while the contractions were manageable. I went for a walk, did some ironing, had several baths! Eventually at about midnight after almost 24 hours of contractions, they were coming 5-6mins apart and I decided it was probably time to go in. I was only 3cm dilated by the time I went in but they admitted me onto the ward anyway, I was lucky it was quiet!

A mere 8 hours later our beautiful baby Frank made his entrance into the world. We came home the next day, full of excitement and feeling like the luckiest people alive. The following day was Mother’s Day, we spent the morning in bed taking it turns to hold our baby boy, amazed at how perfect he was. The midwife came round to carry out the 3 day check and said all was ok. Later that afternoon our family came over and we proudly showed off our beautiful baby. I felt like life couldn’t get any better.

During the night Frank was reluctant to feed. He’d been feeding well throughout the day and was still only 3 days old so at first I just put it down to us not really having a routine yet and perhaps he was just a bit full! However when he wouldn’t feed all night I started to worry. That morning we took him into A&E. We spent an agonising 4 hours there and if I’m honest, were made to feel like silly new parents worrying about something so small. They talked about sending us back to the ward to work on a feeding plan which irritated me. I knew how to feed my baby, I had been doing it fine for 3 days. Something was wrong and I knew it. Eventually they did a blood test which showed that he had an infection. We were taken up to the children’s ward while they monitored him. The nurses reassured us that it was most likely something very minor as he looked and seemed well, but they carried out further tests anyway, just as a precaution we were told. The first of those tests was a lumbar puncture which was to test for Meningitis.

The next few hours are all a bit of a blur. Very quickly we went from worrying about a minor infection to being told our baby had Meningitis. He had a seizure while in the hospital, the most awful thing I have ever seen and something that will haunt me forever. He was rushed down to theatre so they could intubate him and we were told we would be transferred to a Specialist Intensive Care Unit at a hospital nearby. Our world came crashing down around us. Just hours earlier I couldn’t imagine being any happier, now….well there are no words to describe how it felt.

We were taken to the Doctors Staff Room while the Consultant explained the situation to us. Frank had contracted Group B Strep, which had led to meningitis. While the doctor was explaining all this to us I just sat there, staring into space. I was in complete shock. I couldn’t say anything. I couldn’t move. I couldn’t even cry. I just couldn’t accept that this was really happening. If it wasn’t for my amazing husband I honestly don’t know how I would have made it through that day, or the days that followed. He was so strong. Obviously equally as terrified, but just so much stronger than I was.

That first day in particular seemed to last an eternity. Eventually at about midnight we were transferred to Kings College Hospital and Frank was settled into their Intensive Care Unit. We were put up in a room in the hospital and told to try and get some sleep. That morning the Doctor explained that Frank had suffered more seizures during the night. The pain kept on coming. We just sat by his side feeling completely helpless, unable to accept that this was really happening.

That morning we met all of the many Doctors and Nurses that would be looking after Frank while he was in PICU. The consultant sat with us and explained the situation, she said we needed to take it hour by hour and should try not to think ahead any further than that. I watched as several of the doctors and nurses fought back the tears, I couldn’t fight mine. She told us that we were incredibly lucky that we had bought Frank in when we did, the situation could be entirely different if we had waited even just a few hours longer. It doesn’t bear thinking about.

Every hour in that place felt like a week. Our parents came up every day to be with us, we all just sat together watching him, hoping and praying and crying in equal measures. The nurses and doctors were amazing, explaining everything that they were doing and answering all our many questions. Our families forced us to take breaks, just stepping out to get a drink or to try to nap but we couldn’t bear to leave him. When we woke in the morning we were just so desperate to get back to him, we’d run down the corridor, anxious to hear how he’d been during the few hours we had been away.

The first few days were slow, there was no progress really. It was more a case of monitoring him and keeping him stable. We were working towards extubation but obviously they needed to be sure he could breathe on his own before they did so. Eventually, several days later, the time came to do it. It was terrifying and amazing at the same time. He responded really well, I’ve never felt so proud in my whole life. At just one week old our little baby was already proving himself to be one tough boy!

Once the breathing tube was out we were able to hold him for the first time since bringing him into hospital. The nurse passed him to me, I hated that I felt so anxious about holding him, but he just seemed so fragile now, and so very tiny. And there were just so many wires. Despite all this, finally being able to hold my little boy for the first time in days felt absolutely amazing. I must have held him for hours, not ready to put him down or even pass him to Chris. He seemed calm and content. It broke my heart that he had been through so much already and he was still so tiny.

The plan had been to move Frank out of PICU and into the High Dependency Unit once the breathing tube was out, but he seemed to be doing so well that the Doctors were happy to move us onto the General Ward. We were transferred to our local hospital that evening, just 5 days after being admitted. 5 of the longest days of my life, but really it was incredible the progress he had made in such a short time.

Once at our local hospital it was just a case of administering the antibiotics. We managed to get him feeding well, with a bit of persistence, so the NG tube was taken out. It was so lovely to see his little face free of tubes, even if he still had cannulas in every vein they could find! Eventually we got back to being able to care for our baby and I finally started to feel like a Mum. I was able to stay by his side in the hospital but only one parent was allowed meaning that Chris had to go home of an evening. I understand the reasons behind this but it was so hard being separated. It was hard on me being alone in the hospital at night but I think even harder on Chris who had to go home on his own every night, driving home with an empty car seat, seeing his little Moses basket by the side of our bed empty. The 10 days spent there were so much harder than I imagined. A week or so ago I would have given anything to be holding and feeding my baby, but I underestimated how difficult I would find the time there. The reality of what we had been through hit me while I was alone at night. During the day when Chris was there and we had visitors I felt positive and just so lucky, but by the time the evening came around and the ward was dark and quiet I couldn’t stop going over what had happened. I was scared to sleep incase anything happened. Everytime I closed my eyes, the image of my 3 day old baby having a seizure haunted me.

Eventually, 15 days after we took Frank to A&E, we were discharged. Bringing him home felt absolutely incredible. Even more amazing than the first time! The progress our little man had made in just 2 weeks was unbelievable. We have a long road ahead of us. Meningitis brings with it a number of long term effects, and we won’t really know how Frank has been affected for months, even years. He’s still on medication to prevent seizures which I have to give him twice a day, but other than that he’s just doing all the normal things a baby should be doing. We have the first follow up appointment next week and then he’ll be monitored regularly to see how he is developing.

Every day that passes the memory of what we have been through fades a little, undoubtedly it is going to stay with us forever but it does us no good to dwell on it so we have to try, as best we can, to forget the nightmare, but all the while remember to be grateful.

We owe absolutely everything to the fantastic doctors and nurses that helped us get through this. The staff in PICU at Kings were so amazing, and equally the teams at our local hospital and the retrieval team that transferred us to PICU on that awful night. They saved our little boys life, how can you thank someone for something like that? There are just no words to express our gratitude.

I had never heard of GBS and had very little understanding of Meningitis before this experience, and I’m sure many others are the same. We don’t routinely screen for GBS in this country, and there are very few symptoms of the infection in Mum’s so it can be very hard to spot. You can however buy tests online and self test, I only wish I had known this. If you are expecting, or know someone that is, please take a look at this site which contains a lot of useful information as well as providing the test kits http://www.groupbstreptest.co.uk

I also want to post a link to the Meningitis Now website which contains a lot of support information but also information on spotting the symptoms.

Before this experience I thought Meningitis presented as a rash, but I now know that by the time the rash has developed it can often be too late. The symptoms can be difficult to spot, particularly in newborns when you may not be familiar with what is usual behaviour. However, I believe as parents we have a natural instinct to just know when something isn’t right. Always trust those instincts, I will be forever grateful that we did.

Finally, although nothing we do could ever be enough to thank them for what they did, as a small gesture we are aiming to raise some money to donate to the PICU at Kings. King’s provides outstanding care to some of the sickest children in the country who often come from all over the UK in an emergency. The work that they do every single day is truly incredible. We were so very lucky that Frank left the unit after just 5 days but many children are there for months, even years. For these families, the nightmare that we experienced for those 5 days is ongoing.

I know most of you reading this don’t know me personally but if you could find it in your hearts to donate, even the smallest amount, to this wonderful and worthy cause please take a look at our fundraising page.

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12 thoughts on “Frank’s Story”

Beautifully written! I’m so so sorry this happened and I’m so pleased that Frank is better now! What a horrible experience for new parents! Sending love to your whole family ❤️❤️ So important to get this message out there for new families to be better informed!

Not only is Frank the cutest baby ever, but having read this blog (with tears rolling down my face) it’s clear he’s also a very courageous and strong little boy. Your story has really resonated with me, as my little boy (now a strapping 6 foot 2, rugby playing, 16 year old – he will still always be my ‘little boy’) also became very ill at 10 days old. The only clue was his reluctance to feed and his new found ability to sleep for hours on end. What ensued were the worst few weeks of my life.
So I really can empathise with this awful ‘bubble’ of stress and feelings of utter desparation you’ve been through.
May your beautiful boy continue to thrive. Xx

Ah thank you so much, he sure is brave and we think beautiful too 😊 So sorry to hear you went through it with your “little” boy – but so glad that he is so healthy now! I hope I can say the same in 16 years time! xx

This was so sad to read, what a scary time for you, your husband, family and baby Frank. It’s really brave of you to share this story but great to raise awareness. I don’t have children of my own yet but want to soon and already feel much better informed after reading this post, as I’m sure others will too. I wish your family all the best and hope Frank keeps on making a good recovery. What a brave, beautiful little baby you have :) x

Oh my goodness there are no words for how terrifying this must have been for you and your husband. But thank you for sharing your story and promoting greater awareness. And as for Frank, what an amazing little man 💙

Reading your story has brought our story flooding back into my mind, one of my twins born sept 16 contracted gbs meningitis the same as your Frank at less than 24 hours old. Seeing how you described the ordeal is a mirror image of our experience with seizures, tubes and fears. My little girl is 10 months old and one of the truly lucky ones. The drs and nurses that save their lives really are angels without the wings xxxx

I’m so sorry this post bought it all back, I know how painful it is. So glad to hear your little girl is doing well now though. Has she any effects from the meningitis? Hope you don’t mind me asking! xxx

Hi Kate, your heartbreaking story was a sad but also inspirational read. With GSB in the news I’d love to have a chat with you about it for parenting site goodtoknow.co.uk. I’m on lowe_stephAThotmailDOTcom if you’re interested…

I follow you on Instagram and am so glad to see your little man doing so much better.